Today was Charlotte's surgery to have her port removed. Primary's had us scheduled to have surgery at 11:30am, and wanted us to check in at 10 am. That meant we started our drive up at 9am. By the time we finished and got home, it was almost 5pm. Long day, most of it waiting. Waiting to move from the check-in room to the weigh-in room. From the weigh-in room, to a prep operatory (where I had to wipe Charlotte's entire body off with Chlorhexidine wipes, an interesting tidbit for those in my audience who have interest in infection control). From there, Charlotte and I waited to be taken to another pre-op room by the nurse practitioner, who looked concerned about Charlotte's reappearing rash. I assured her we have been battling it since January, and had hopes that it might clear eventually, now that she's done with chemo.
The final pre-op room only had a few patients in it. We waited there, watching cartoons, until her anesthesiologist came in to chat. He promised to give her lemon-raspberry scented laughing gas, and when she was totally out, she would receive her IV. He said he'd take Charlotte momentarily, but warned me not to let him take her until we had spoken with the general surgeon. The general surgeon finally came in about noon. He told me the surgery would take 30 minutes and what follow-up care would be needed. He said he would make an incision where her scar was, and since the scar was pretty large, he would try to remove some of the scar tissue and use glue to seal the wound after.
A few moments later, the anesthesiologist came and gathered Charlotte and me. He led us down a hallway and to a set of doors. "Mom," he said, "this is where we say goodbye to you." He gave me directions to the parents' waiting area, and walked off with Charlotte through a set of large double-doors.
The last time Charlotte had surgery in the same-day surgery department was 2 years ago - to put in her port, get a bone marrow sample, and her first spinal tap. Every other spinal tap she has had since has been in the Primary Children's RTU (Rapid Treatment Unit) or conscious sedation in the surgery suite adjacent to the oncology clinic. We only used the RTU for the first couple spinal taps. They would let a parent stay with her until she was put under general anesthesia, then they would escort the parent out to the waiting room. When she was placed under conscious sedation in the clinic, I never left the room at all. Watching her leave me with the doctor made me want to cry. She's so brave. She just gave me a hug and waved at me as she walked away. I wanted to hold her hand a little longer.
About 20 minutes later, the doctor came into the waiting area. He asked me to step outside, and just leave my belongings in the waiting room. He sat me down in the hall and told me they were having problems. The line to her port had calcified and was resisting being removed. The doctor said he was pulling as hard as he dared, and he didn't want to pull harder and potentially cause damage. Her line was wound up under a vein under her clavicle. He said he could do 2 options. 1. Pull out as much line as he could and cut off the line at the point where he couldn't pull it out any further. They'd seal the remaining line, and leave it in her body. He'd close her up and take an X-ray and have us come in tomorrow to take another x-ray to see if the line had moved. 2. He could make an incision in her clavicle and try to fish it out that way. The surgeon wasn't wild about option 2, and neither was I. There's a lot of muscle and nerves in a person's shoulder, and I was afraid of potential damage to her arm, not to mention another scar. I asked the surgeon if leaving in the line would mean we would still have to bring her into the ER whenever she had a fever. He said he wasn't sure, he'd call our oncologist to see what they had to say about it. He also said that if he closed Charlotte up with some of the line still in, and it appeared to be moving after, we would need to bring her back in for another surgery to have cardiology go in and take it out. They had different tools that would be more successful removing it. However, he suspected that with how hard he was trying to pull the line out, it was going to be staying put.
I told him that I definitely thought that was the better choice, and he went back into surgery, and I went to go bite my nails and text Sean from the waiting area.
Another half hour, and the surgeon came in, smiling. "After I went back in, I tried pulling on it some more, and I think I was able to get it all out. We'll have them take an x-ray, and I'll talk to you in recovery once I get a chance to see the x-ray. She's doing great."
I was so relieved. Thankfully, the x-ray didn't show anything left behind. I peeked at it after the tech took the image. I don't claim to be an expert, but I could tell they were able to get everything out. I remember seeing Charlotte's port line when they took an x-ray of her chest in January when she had that hideous cough. I remember how her port appeared in the x-ray, and how the line snaked up and around her clavicle area. I remember being amazed at how long that line appeared, and being in awe about how somebody slowly fished that line through her tiny body.
After recovery, we headed up to the oncology clinic. Dr. Barnett checked out Charlotte's scar, and expressed delight at how nice it looked. Most of the kids apparently get the old-school suturing, not the crazy glue seal that Charlotte received. Her blood levels are also looking great! Her white blood cells and red blood cells are normal. Her bilirubin dropped from a 4 to a 2, and her ANC is nice and robust, which is everything we want to hear.
Charlotte's doing well. She's a little sore, so I told her she could take tomorrow off school. We'll see how she does tomorrow. Her oncologists originally told me she should be fine to go to school the day after, but her surgeon said she might be pretty sore. I imagine so, with all that tugging he had to do. She's been told no baths or swimming for the next couple weeks (showers are okay), and to not do any monkey bars or strenuous activity for a few days.
One final piece of good news - Now that the port is out, we have to go to the lab to get blood drawn a half-hour before every clinic appointment. The oncology nurses don't draw blood in the clinic if you don't have a port. Charly's been very unhappy about losing her port, because she did not like having a vial of blood drawn from her elbow. Dr. Barnett told me today that they can do all the necessary blood tests with just a finger poke! No vials of blood necessary! I was so thrilled. Charlotte is still leery, but I told her it would be a real quick poke and wouldn't hurt as long, and it would be a lot easier. We go back in another month, so we'll see how she takes the finger poke then.
It was a long day, but a good day.
Monday, October 20, 2014
No More Port
Today was Charlotte's surgery to have her port removed. Primary's had us scheduled to have surgery at 11:30am, and wanted us to check in at 10 am. That meant we started our drive up at 9am. By the time we finished and got home, it was almost 5pm. Long day, most of it waiting. Waiting to move from the check-in room to the weigh-in room. From the weigh-in room, to a prep operatory (where I had to wipe Charlotte's entire body off with Chlorhexidine wipes, an interesting tidbit for those in my audience who have interest in infection control). From there, Charlotte and I waited to be taken to another pre-op room by the nurse practitioner, who looked concerned about Charlotte's reappearing rash. I assured her we have been battling it since January, and had hopes that it might clear eventually, now that she's done with chemo.
The final pre-op room only had a few patients in it. We waited there, watching cartoons, until her anesthesiologist came in to chat. He promised to give her lemon-raspberry scented laughing gas, and when she was totally out, she would receive her IV. He said he'd take Charlotte momentarily, but warned me not to let him take her until we had spoken with the general surgeon. The general surgeon finally came in about noon. He told me the surgery would take 30 minutes and what follow-up care would be needed. He said he would make an incision where her scar was, and since the scar was pretty large, he would try to remove some of the scar tissue and use glue to seal the wound after.
A few moments later, the anesthesiologist came and gathered Charlotte and I. He led us down a hallway and to a set of doors. "Mom," he said, "this is where we say goodbye to you." He gave me directions to the parents waiting area, and walked off with Charlotte. The last time Charlotte had surgery in the same-day surgery department was 2 years ago - to put in her port, get a bone marrow sample, and her first spinal tap. Every other spinal tap she has had since has been in the Primary Children's RTU (Rapid Treatment Unit) or conscious sedation in the surgery suite adjacent to the oncology clinic. We only used the RTU for the first couple spinal taps. They would let a parent stay with her until she was put under general anesthesia, then they would escort the parent out to the waiting room. When she was placed under conscious sedation in the clinic, I never left the room at all. Watching her leave me with the doctor made me want to cry. She's so brave. She just gave me a hug and waved at me as she walked away. I wanted to hold her hand a little longer.
About 20 minutes later, the doctor came into the waiting area. He asked me to step outside, and just leave my belongings there. He sat me down in the hall and told me they were having problems. Her port had calcified and was resisting being removed. The doctor said he was pulling as hard as he dared, and he didn't want to pull harder and potentially cause damage. Her line was wound up under a vein under her clavicle. He said he could do 2 options. 1. Pull out as much line as he could and cut off the line at the point it was resisting removal. They'd seal the line, and leave it in her body. He'd take an xray and have us come in tomorrow to take another one to see if the line had moved. 2. He could make an incision in her clavicle and try to fish it out that way. The surgeon wasn't wild about option 2, and neither was I. There's a lot of muscle and nerves, and not to mention another scar. I asked the surgeon if leaving in the line would mean we would still have to bring her in whenever she had a fever. He said he wasn't sure, he'd call our oncologist to see what they had to say about it. He also said that if he closed Charlotte up with some of the line still in, and it appeared to be moving after, we would need to bring her back in to have cardiology go in and take it out. However, he suspected that with how hard he was trying to pull it out, it was going to be staying put.
I told him that I definitely thought that was the better choice, and he went back into surgery, and I went to go bite my nails and text Sean in the waiting area.
Another half hour, and the surgeon came in, smiling. "After I went back in, I tried pulling on it some more, and I think I was able to get it all out. We'll have them take an xray, and I'll talk to you in recovery once I get a chance to see the xray. She's doing great."
I was so relieved. Thankfully, the xray didn't show anything left behind. I peeked at it after the tech took the image, and although I'm not a radiologist, I remember seeing Charlotte's port line when they took an xray of her chest in January when she had that hideous cough. I remember how her port appeared in the xray, and how the line snaked up and around her clavicle area. I remember being amazed at how long that line appeared, and being in awe about how somebody slowly fished that line through her tiny body.
After recovery, we headed up to the oncology clinic. Dr. Barnett checked out Charlotte's scar, and expressed delight at how nice it looked. Most of the kids apparently get the old-school suturing, not the crazy glue seal that Charlotte received. Her blood levels are also looking great! Her white blood cells and red blood cells are normal. Her bilirubin dropped from a 4 to a 2, and her ANC is nice and robust, which is everything we want to hear.
Charlotte's doing well. She's a little sore, so I told her she could take tomorrow off school. We'll see how she does tomorrow. Her oncologists originally told me she should be fine to go to school the day after, but her surgeon said she might be pretty sore. I imagine so, with all that tugging he had to do. She's been told no baths or swimming for the next couple weeks (showers are okay), and to not do any monkey bars or strenuous activity for a few days.
One final piece of good news - Now that the port is out, we have to go to the Primary's lab to get blood drawn a half-hour before every clinic appointment. The oncology nurses don't draw blood in the clinic if you don't have a port. Charly's been very unhappy about losing her port, because she did not like having a vial of blood drawn from her elbow. Dr. Barnett told me today that they can do all the necessary blood tests with just a finger poke! No vials of blood necessary! I was so thrilled. Charlotte is still leery, but I told her it would be a real quick poke and wouldn't hurt as long, and it would be a lot easier. We go back in another month, so we'll see how she takes the finger poke then.
It was a long day, but a good day.
The final pre-op room only had a few patients in it. We waited there, watching cartoons, until her anesthesiologist came in to chat. He promised to give her lemon-raspberry scented laughing gas, and when she was totally out, she would receive her IV. He said he'd take Charlotte momentarily, but warned me not to let him take her until we had spoken with the general surgeon. The general surgeon finally came in about noon. He told me the surgery would take 30 minutes and what follow-up care would be needed. He said he would make an incision where her scar was, and since the scar was pretty large, he would try to remove some of the scar tissue and use glue to seal the wound after. 
A few moments later, the anesthesiologist came and gathered Charlotte and I. He led us down a hallway and to a set of doors. "Mom," he said, "this is where we say goodbye to you." He gave me directions to the parents waiting area, and walked off with Charlotte. The last time Charlotte had surgery in the same-day surgery department was 2 years ago - to put in her port, get a bone marrow sample, and her first spinal tap. Every other spinal tap she has had since has been in the Primary Children's RTU (Rapid Treatment Unit) or conscious sedation in the surgery suite adjacent to the oncology clinic. We only used the RTU for the first couple spinal taps. They would let a parent stay with her until she was put under general anesthesia, then they would escort the parent out to the waiting room. When she was placed under conscious sedation in the clinic, I never left the room at all. Watching her leave me with the doctor made me want to cry. She's so brave. She just gave me a hug and waved at me as she walked away. I wanted to hold her hand a little longer. 
About 20 minutes later, the doctor came into the waiting area. He asked me to step outside, and just leave my belongings there. He sat me down in the hall and told me they were having problems. Her port had calcified and was resisting being removed. The doctor said he was pulling as hard as he dared, and he didn't want to pull harder and potentially cause damage. Her line was wound up under a vein under her clavicle. He said he could do 2 options. 1. Pull out as much line as he could and cut off the line at the point it was resisting removal. They'd seal the line, and leave it in her body. He'd take an xray and have us come in tomorrow to take another one to see if the line had moved. 2. He could make an incision in her clavicle and try to fish it out that way. The surgeon wasn't wild about option 2, and neither was I. There's a lot of muscle and nerves, and not to mention another scar. I asked the surgeon if leaving in the line would mean we would still have to bring her in whenever she had a fever. He said he wasn't sure, he'd call our oncologist to see what they had to say about it. He also said that if he closed Charlotte up with some of the line still in, and it appeared to be moving after, we would need to bring her back in to have cardiology go in and take it out. However, he suspected that with how hard he was trying to pull it out, it was going to be staying put.
I told him that I definitely thought that was the better choice, and he went back into surgery, and I went to go bite my nails and text Sean in the waiting area.
Another half hour, and the surgeon came in, smiling. "After I went back in, I tried pulling on it some more, and I think I was able to get it all out. We'll have them take an xray, and I'll talk to you in recovery once I get a chance to see the xray. She's doing great."
I was so relieved. Thankfully, the xray didn't show anything left behind. I peeked at it after the tech took the image, and although I'm not a radiologist, I remember seeing Charlotte's port line when they took an xray of her chest in January when she had that hideous cough. I remember how her port appeared in the xray, and how the line snaked up and around her clavicle area. I remember being amazed at how long that line appeared, and being in awe about how somebody slowly fished that line through her tiny body.
After recovery, we headed up to the oncology clinic. Dr. Barnett checked out Charlotte's scar, and expressed delight at how nice it looked. Most of the kids apparently get the old-school suturing, not the crazy glue seal that Charlotte received. Her blood levels are also looking great! Her white blood cells and red blood cells are normal. Her bilirubin dropped from a 4 to a 2, and her ANC is nice and robust, which is everything we want to hear.
Charlotte's doing well. She's a little sore, so I told her she could take tomorrow off school. We'll see how she does tomorrow. Her oncologists originally told me she should be fine to go to school the day after, but her surgeon said she might be pretty sore. I imagine so, with all that tugging he had to do. She's been told no baths or swimming for the next couple weeks (showers are okay), and to not do any monkey bars or strenuous activity for a few days.
One final piece of good news - Now that the port is out, we have to go to the Primary's lab to get blood drawn a half-hour before every clinic appointment. The oncology nurses don't draw blood in the clinic if you don't have a port. Charly's been very unhappy about losing her port, because she did not like having a vial of blood drawn from her elbow. Dr. Barnett told me today that they can do all the necessary blood tests with just a finger poke! No vials of blood necessary! I was so thrilled. Charlotte is still leery, but I told her it would be a real quick poke and wouldn't hurt as long, and it would be a lot easier. We go back in another month, so we'll see how she takes the finger poke then.
It was a long day, but a good day.
Friday, October 10, 2014
The End ... of Chemo!
lt's been a real busy couple weeks, but I feel I need to sit down and make sure I get these "lasts" written for the blog.
September 25th - The last Thursday in September, was Charlotte's last IV chemo appointment. What a long journey! Everyone at the clinic kept asking how she was planning on celebrating and if she was having a party. She was planning a party, but she wanted to have it on her actual Last Day of Chemo - October 4th.
We brought Naomi to the clinic. They told us it would be fine for the final ceremony. Then, the day before, I get a voicemail that says that NO siblings could come to the clinic - because of the enterovirus that's going around. Every time we get an appointment reminder they remind us not to bring other children to the clinic - as there are many immunocompromised patients there. They also have a sign on the door to the clinic that says "no siblings allowed", and if you missed that sign, they have another one, right next to the sign in sheet on the reception desk. Which is why, Naomi has never been to the clinic.
Given that it was Charly's final chemo visit, I called to see if it might still be permissible to bring Naomi - enterovirus protocol or not. I was glad I did, because Sandy, the receptionist, told me that should be fine to bring Naomi since it was a special occasion.
It was a busier day than usual that day. There were quite a few kids waiting to be seen. Naomi happily greeted one cute little bald toddler and tried to interact with her - but the little girl was too shy to say hello.
Every time one of our nurses or doctors came into the room, they exclaimed, "You've never been her before?" to Naomi. Sean and I pointed out that that's because they specifically say to keep siblings home, we respectfully obeyed. They looked a little sheepish, and said, "Yes, but families usually end up bringing their kids in a few times during treatment, because of scheduling conflicts".
Sean kept trying to film Charlotte and asking if she was excited to be finished, but that would just prompt scowls from Charlotte. She doesn't like to be filmed. Sean doesn't realize he has to be sneaky. Which is how I get most of my shots of her smiling in the clinic.
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When she finished her chemo, the nurses and child welfare workers all gathered together and began to clap and stomp - they sang "No More, No More, CHEMO, Ther-a-py!" to the tune of Queen's "We Will Rock You". They presented her with a super soft blanket wrapped around a scrapbook kit, a My Little Pony set, and a Build-A-Bear - all the things Charlotte loves most.
She then was brought to the bell back by the infusion area. I wish I had taken a photo of the poem inscribed on the plaque that they had Charlotte read. At the end, they had Charlotte ring the bell 3 times - to signal she was done. Big cheers and smiles everywhere. It was awesome.
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Then we went to lunch - Charlotte was back on steroids for the final time. It was just the first day, but her appetite was craving ribs and mashed potatoes. By the time we were done with lunch, Naomi only had 45 minutes left of her school day. Considering we'd been gone for the week prior on family vacation, Naomi was told by mom and dad she had to go finish the day and try to get some make-up work collected.
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The following Tuesday was Charlotte's LAST dose of steroids. It felt like they really hit her harder this time. On Sunday, I made her scrambled eggs and bacon. She was still hungry, so she had a bowl of cereal. An hour later, she was still hungry, so she had a warmed up helping of Chicken and Broccoli casserole before she went to church. Then, she had an early dinner and a second, later dinner before bed. As usual during steroid time, she passed out about 7pm.
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Friday, I was traveling for work, but Charlotte had the post-steroid migraine that we always seem to see 2-3 days after she discontinues the pills. They get so bad, she usually barfs. Which she did, so she stayed home from school to enjoy peace and quiet.
I am so glad to see the end of steroids.
Finally, Saturday was her last dose of chemo pills! Charlotte wants to be a scientist when she grows up, but if that doesn't work out, she would be a great party planner. She's been making plans for her party for over a month. Her guest list was small. Every time I asked if she'd like to invite more kids/people, she firmly told me "NO". She just wanted some of her best pals. She also knew exactly what she wanted to do.
First, she drew pictures of what she called cancer cells. Then, she taped them to our walls for the guests to shoot with Nerf guns. Then, she gave everyone sheets of paper with the title: "If I were on steroids, I would eat...." The kids drew their favorite foods on the paper.
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Next, we had pizza and Grandma's homemade breadsticks. Charly loves (rightly so) her grandma's breadsticks, so she called in an order for the party a couple days before. After pizza, we beat a piñata like it was cancer. I had Sean set it up in the garage. None of our trees outside are tall enough. Sean wanted to set it up inside, but I wasn't about having blindfolded kids with a broomstick being that close to our flatscreen TV.
After wacking cancer into oblivion, the kids came inside for cake and ice cream. Then they began selecting what glow stick accessories they wanted for the flashlight disco.
I don't exactly know the origins of flashlight discos, but for me, it came from my sister, Heather. I remember being stressed out about BYU Winter finals, and driving up to visit Heather at her condo. She brought out the flashlights, blasted the music, and we danced in the dark. It's super de-stressing. You should try it.
I introduced the concept to Charlotte during her year of at-home schooling. It was winter, she wasn't cooperating with me on homework, because she had cabin fever and hadn't seen friends all day. I promised her a flashlight disco if she would just finish her assignments. She perked up and finished her homework. My good pal and neighbor, Ashly McDaniel, let me borrow her kids past their bedtime to come over and boogie down with us. That night is one of the days that sticks out in my mind. I remember my cranky bald girl going to bed with a smile on her face.
When it came time for a party to celebrate the end of chemo, I knew we needed to have another one. This time, we had a mega pack of glow sticks and confetti cannons to help make it extra festive. It was so fun to see those kids boogie in the dark.
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Charly's been off chemo for almost a week now, and I don't know if I'm imagining it, but I think she is looking a little less yellow. I'm looking forward to hearing that her bilirubin drastically dropped by the next appointment. Which, by the way, is when she gets her port taken out.
Charly is pretty attached to her port (forgive the pun), and is very concerned about losing it. She isn't thrilled with the idea of monthly blood draws without it. I keep reminding her that they will use "freezy spray", but Charly hates needles. I don't blame her.
When I speak with adult cancer patients, there seems to be a different protocol. It appears pediatric oncologists want the kids to remove their ports as soon as possible after their chemo is over. They are concerned with potential infection, and feel that the risks associated with keeping the port in the body far exceed the benefits. I admit, I am happy to know the "fever protocol" will be over once the port has been removed. No more running to the ER when Charlotte has a fever over 100.4. No more waiting for blood samples and driving home past midnight after she's been given IV antibiotics.
Yes, that's a lot of "lasts" crammed into just a few short weeks. I am amazed and humbled by the tender mercies and the blessings of the last two years, and I am so grateful to be living in these days, in this country, with access to an excellent pediatric oncology team. I am so blessed to have Charlotte in my life, she is a truly individual. I look forward to seeing her achieve anything she sets her mind to.
September 25th - The last Thursday in September, was Charlotte's last IV chemo appointment. What a long journey! Everyone at the clinic kept asking how she was planning on celebrating and if she was having a party. She was planning a party, but she wanted to have it on her actual Last Day of Chemo - October 4th.
We brought Naomi to the clinic. They told us it would be fine for the final ceremony. Then, the day before, I get a voicemail that says that NO siblings could come to the clinic - because of the enterovirus that's going around. Every time we get an appointment reminder they remind us not to bring other children to the clinic - as there are many immunocompromised patients there. They also have a sign on the door to the clinic that says "no siblings allowed", and if you missed that sign, they have another one, right next to the sign in sheet on the reception desk. Which is why, Naomi has never been to the clinic.
Given that it was Charly's final chemo visit, I called to see if it might still be permissible to bring Naomi - enterovirus protocol or not. I was glad I did, because Sandy, the receptionist, told me that should be fine to bring Naomi since it was a special occasion.
It was a busier day than usual that day. There were quite a few kids waiting to be seen. Naomi happily greeted one cute little bald toddler and tried to interact with her - but the little girl was too shy to say hello.
Every time one of our nurses or doctors came into the room, they exclaimed, "You've never been her before?" to Naomi. Sean and I pointed out that that's because they specifically say to keep siblings home, we respectfully obeyed. They looked a little sheepish, and said, "Yes, but families usually end up bringing their kids in a few times during treatment, because of scheduling conflicts".
Sean kept trying to film Charlotte and asking if she was excited to be finished, but that would just prompt scowls from Charlotte. She doesn't like to be filmed. Sean doesn't realize he has to be sneaky. Which is how I get most of my shots of her smiling in the clinic.
When she finished her chemo, the nurses and child welfare workers all gathered together and began to clap and stomp - they sang "No More, No More, CHEMO, Ther-a-py!" to the tune of Queen's "We Will Rock You". They presented her with a super soft blanket wrapped around a scrapbook kit, a My Little Pony set, and a Build-A-Bear - all the things Charlotte loves most.
She then was brought to the bell back by the infusion area. I wish I had taken a photo of the poem inscribed on the plaque that they had Charlotte read. At the end, they had Charlotte ring the bell 3 times - to signal she was done. Big cheers and smiles everywhere. It was awesome.
Then we went to lunch - Charlotte was back on steroids for the final time. It was just the first day, but her appetite was craving ribs and mashed potatoes. By the time we were done with lunch, Naomi only had 45 minutes left of her school day. Considering we'd been gone for the week prior on family vacation, Naomi was told by mom and dad she had to go finish the day and try to get some make-up work collected.
The following Tuesday was Charlotte's LAST dose of steroids. It felt like they really hit her harder this time. On Sunday, I made her scrambled eggs and bacon. She was still hungry, so she had a bowl of cereal. An hour later, she was still hungry, so she had a warmed up helping of Chicken and Broccoli casserole before she went to church. Then, she had an early dinner and a second, later dinner before bed. As usual during steroid time, she passed out about 7pm.
Friday, I was traveling for work, but Charlotte had the post-steroid migraine that we always seem to see 2-3 days after she discontinues the pills. They get so bad, she usually barfs. Which she did, so she stayed home from school to enjoy peace and quiet.
I am so glad to see the end of steroids.
Finally, Saturday was her last dose of chemo pills! Charlotte wants to be a scientist when she grows up, but if that doesn't work out, she would be a great party planner. She's been making plans for her party for over a month. Her guest list was small. Every time I asked if she'd like to invite more kids/people, she firmly told me "NO". She just wanted some of her best pals. She also knew exactly what she wanted to do.
First, she drew pictures of what she called cancer cells. Then, she taped them to our walls for the guests to shoot with Nerf guns. Then, she gave everyone sheets of paper with the title: "If I were on steroids, I would eat...." The kids drew their favorite foods on the paper.
Next, we had pizza and Grandma's homemade breadsticks. Charly loves (rightly so) her grandma's breadsticks, so she called in an order for the party a couple days before. After pizza, we beat a piñata like it was cancer. I had Sean set it up in the garage. None of our trees outside are tall enough. Sean wanted to set it up inside, but I wasn't about having blindfolded kids with a broomstick being that close to our flatscreen TV.
After wacking cancer into oblivion, the kids came inside for cake and ice cream. Then they began selecting what glow stick accessories they wanted for the flashlight disco.
.JPG) |
| multi-purpose pinata.. it can be converted into a hat after beating it to smithereens |
I introduced the concept to Charlotte during her year of at-home schooling. It was winter, she wasn't cooperating with me on homework, because she had cabin fever and hadn't seen friends all day. I promised her a flashlight disco if she would just finish her assignments. She perked up and finished her homework. My good pal and neighbor, Ashly McDaniel, let me borrow her kids past their bedtime to come over and boogie down with us. That night is one of the days that sticks out in my mind. I remember my cranky bald girl going to bed with a smile on her face.
When it came time for a party to celebrate the end of chemo, I knew we needed to have another one. This time, we had a mega pack of glow sticks and confetti cannons to help make it extra festive. It was so fun to see those kids boogie in the dark.
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| Boogie down! |
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| Just want to throw the confetti one more time. |
Charly's been off chemo for almost a week now, and I don't know if I'm imagining it, but I think she is looking a little less yellow. I'm looking forward to hearing that her bilirubin drastically dropped by the next appointment. Which, by the way, is when she gets her port taken out.
Charly is pretty attached to her port (forgive the pun), and is very concerned about losing it. She isn't thrilled with the idea of monthly blood draws without it. I keep reminding her that they will use "freezy spray", but Charly hates needles. I don't blame her.
When I speak with adult cancer patients, there seems to be a different protocol. It appears pediatric oncologists want the kids to remove their ports as soon as possible after their chemo is over. They are concerned with potential infection, and feel that the risks associated with keeping the port in the body far exceed the benefits. I admit, I am happy to know the "fever protocol" will be over once the port has been removed. No more running to the ER when Charlotte has a fever over 100.4. No more waiting for blood samples and driving home past midnight after she's been given IV antibiotics.
Yes, that's a lot of "lasts" crammed into just a few short weeks. I am amazed and humbled by the tender mercies and the blessings of the last two years, and I am so grateful to be living in these days, in this country, with access to an excellent pediatric oncology team. I am so blessed to have Charlotte in my life, she is a truly individual. I look forward to seeing her achieve anything she sets her mind to.
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